Monday, November 29, 2010

I don't think I've mentioned it a lot here, but I also do quite a bit of artwork, and sometimes I let people see my work. For the past month and a half, I've had a lot of my work at the Kerry's Place Autism Services Resource Centre in Belleville, Ontario, as part of the Spectrum Art Show. I kinda started the Show five years ago when I worked for KPAS.

Tomorrow, November 30th, I'll be at the Resource Centre from 2pm to 6pm for a "Meet the Artist" event. I'm being presented as an Autistic artist and Autism advocate.

If any of my readers are in the area, and have the time, it'll be awesome to meet some of you!

Monday, November 22, 2010

Up here in Canada, we had our Thanksgiving back in October, so we're all getting ready for Christmas/Hanukkah/other winter holidays. I'm going to be very honest: I celebrate Christmas, so my default for the holiday season is Christmas. This doesn't mean that stuff I say cannot be used for other holidays, it's just a religious difference, use as need.

But I'm kinda using my own experiences for this, so I'm going to resort to my default of Christmas. Also, I'm mainly addressing parents in this post, but I'm certain that some of these pointers can be used for Autistics of all ages.

But yes, the winter holiday season is approaching, and it's a very busy, hectic and overwhelming time of year, full of all the things that set off Autistics and other highly sensitive individuals. The season is full of parties, religious events, meeting a lot of people and having relatives all crowd together, malls full of shoppers and noisy music, and regular family festivities.

From my own experiences, there's nothing really new in terms of needs and challenges, just that the time of year makes everything more chaotic and intense. Add in the excitement for a countdown, the anxiety of a lot of surprises, plus a lot of the goodies that get passed around, and it's no wonder that things get overwhelming. The trick is to manage the new sources of over-stimulation and stress while still participating in the holiday so that everyone can enjoy.

Social:
The holidays are filled with meeting people, lots of relatives, crowded house, parties, and other social complications that can make the basics, such as manners for receiving presents, more difficult to remember and perform.

Please keep in this in mind when interacting with others, that even if you know an autistic that is capable of being more polite, the overwhelming pressure on their social skills (and other skills) may mean that they are functioning on a lower level than their norm. It may be taxing for them to remember simple Please and Thank Yous.

Be mindful of this, and be patient. Little reminders on manners are okay, but don't be too insistent, because this is a very hard time of year and keeping the stress levels as low as possible all around is a good idea.

At events where its available, explain your and/or your child's needs, find a time-out corner for breaks, be mindful but try not to freak out at little slip ups, and if you find the stress becoming too high, leave early. Understanding friends and family won't mind too much, and you can get back to the ones who do. There might be some grumpy faces, but catching the stress at "grumpy" is better than "meltdown", where pretty much anything can set off a meltdown. So be very mindful of the warnings signs.

And if you think that so many events is too taxing, skip them. Take a break and pace yourselves. Friends and family members may not totally understand or be happy about it, but you're taking care of both your autistic child, and/or yourself. You could have a relaxing night at home, everyone doing a relaxing activity, maybe do something special if you think everyone can handle it.

I know that there are events that you can't skip, like certain religious events, or that mandatory company party. And to be honest, some of those are, well, boring for kids, and overwhelming in general, especially if it's formal (see sensory below). But don't be afraid to find a babysitter and go, even if it's for a little while so that you can fill the "I attended" requirements.

As for babysitters, it's good to give them some information about autism, so they know, but don't expect them to be professional respite workers. Look for someone who is friendly and flexible, and maybe have them meet the kids a few days in advance, if it's a new babysitter, so that everyone knows each other and you can see whether they get along. My parents tried to keep the same few babysitters, so even if there was an emergency, my brother and I would know the babysitter.

Also, parents, don't be afraid to take the time to go off by yourselves and have a night together. Everyone needs a break every once in a while during the holidays.

Sensory:
You probably could name quite a few sensory issues we Autistics have this time of year, as every thing becomes more intense, and we tend to react more because of that. I'm talking the crowds in mall, the rushing here and there, all the loud music and holiday jingles, strange and new foods, smells and textures, and winter clothes.

Again, a lot of it is the same issues each of us have, just more intense during the holiday season. As a result, it may be better to plan shopping trips for times when it's not so busy, or if that's not possible, to shorten the trips as to accommodate a lowered tolerance limit. It'll probably mean more trips, but it might also reduce overload.

Another sensory issue is foods, and there are many strange things to eat, with rather strange names. Don't worry about having your autistic test new foods; while it's certainly an opportunity to try new things, it may be more that they can handle during the holidays. If they consent to try a bite of something you think they might like, awesome. But be okay if they decide not to try it right now.

As for music, if you want to have it on, keep the volume down. If there's people over, well, you might want to just turn it off, because it becomes another source of noise.

The final issue I can think of for sensory is clothes. For me at least, this is big challenge during the winter months. I find that during winter, there's less moisture in the air, and so my skin becomes dry and more sensitive. This means even more sensitive to the feel of cloth, textures, and seams, especially after bathing when water has dehydrated my skin. Even sensory-soothing clothing can become irritants during this time of year.

To counter-act difficulties dressing due to this, I suggest bathing well in advance of events to give the skin time to hydrate and produce its own oils.

Also, in winter, fabrics are heavier, which is good for those who need more sensory input, but clothing contains more seams and restrictions of movement. Given the time of year, some articles of clothing are necessary to wear outside. So try to use the hat, mitts, scarves and other winter gear that your child seems able to wear the longest, but when possible, limit the amount of time they need to be wearing their gear.

As for the times where formal wear is required, it becomes a matter of how much your autistic can tolerate. Try to buy formal wear that can be worn for long periods of time, or else bring along a spare set of clothes, just in case. Otherwise, let your child wear what's comfortable and looks good.

Schedule:
Another source of distress during the holidays is the deviancy from our regular schedules. Understandably, there's a lot of things to keep track of, and it can get very busy and overwhelming. What I think is key is keeping as much of the regular schedule, with more cool-down periods. The normalcy of it will be grounding and calming, reassuring your autistic that things are still under control, and it helps transitioning between the holiday season and the non-holiday season.

For all the different events and activities, if possible and when appropriate, try to include your autistic in the decision making process. This will help them to be involved and be more informed about what's happening. This also gives them the opportunity to express what they'd like to do and experience the holiday better.

I also suggest to try to do the same things year after year; this makes the holiday a part of the yearly schedule, and as time goes on, may make the holidays easier as your autistic has a better idea of what to expect.

What I find is that after the holidays, or any big and draining events, I have a period of transition and adjustment to get back into the regular schedule. Sometimes this includes period where I regress in skills, tolerance and energy as I am recovering from the event, especially when I have been unable to maintain my regular schedule and practice skills.

During this recovery period, be patient and mindful that your autistic may be drained from the holiday, get back into the regular schedule as soon as possible, and allow them to have more quiet time periods. For me, to recover from a weekend usually takes about a week, but it's different for everyone.

As well as what I have above, I asked my mother for some tips and advice on handling the holidays. After all, she did raise myself and my brother, both of us with a wide range of difficulties for this time of year. So, from my mother:

1) Don't do too much on any one day; usually one event per day is enough.

2) Each morning, share that day's schedule with the kids, and only that day's schedule. Don't overwhelm them with future days and activities; stay day by day. Also have it that the kid can carry it along and refer to it.

3) Keep clothes soft and comfortable.

4) Have quiet time, and let them know that it's quiet time, so that they can relax properly.

5) For children who have a hard time staying at the table, have a candle on the table. Makes meal times more special, and keep their attention so they don't leave. Keep a plate under the candle, and watch for fingers that start playing with wax. (Candles are a two-edged sword; can keep kid at table, but they may want to play with the melted wax)

6) Always serve some of the kid's favourite foods at every meal, so that if they don't like the big meal they at least have something to eat.

7) Make sure that relatives and guests know the kid's needs.

8) Limit the amount of people coming over and in the house at any given time.

9) Have a safe place for your kid to withdraw.

10) If you have a large family gathering, rent a hall. But make sure to keep a safe corner.

11) Don't force the kid to do greetings and farewells; it's too much commotion in the front hall.

12) Allow your kid to choose toys to hide away that they do not have to share, but at the same time, have your kid pick toys that they do have to share with other children.

13) If playing music in the background, have calm music and be careful of the volume.

14) When opening gifts, clean up the boxes and wrappers as you go, so that it's not too chaotic. After opening, take gifts to each person's respected places to keep the central space calm.

15) If the kid like puzzles, create a puzzle corner where they can interact with others one-on-one as they work on a puzzle.

16) Find some way that the child can contribute and make the holiday their own. Give them suggestions and work together on whatever the child chooses, such as help decorate, help making food, setting the table, putting stamps on and licking shut Christmas card envelops, etc

If you have any questions about this list, or you think I've missed something, feel free to ask and comment.

Monday, November 15, 2010

While I'm pretty sure it can be annoying in some situations, preservating and being stubborn or determined can have some benefits. One being keeping at competing in contests for a long time, such as how the Autism Women's Network has kept in the Pepsi Refresh contest for so long.

This month, AWN started at rank #5, and has slipped to #12. With the combined help and voting of the community, we can get back up into the top ten and finally be able to run the workshops and programs that this funding hinges on.

As a reminder of what AWN is planning to do with the money, here's the project profile on the Pepsi site.

The Autism Women's Networkis unique in that it wasfounded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources.

We plan to set up 5ProjectFAIM Workshopsacross the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications.

Please help us to continue to support Autistic females who may not have access to supports and accommodations otherwise. The workshops may be a small step towards a greater change and difference in many women's lives.

Thank you very much.

(Please pardon the decreased quality of my writing in this post; I am having some communication difficulties today)

(Disclosure: Corina Becker is the Director of Networking for the Autism Women's Network. However, all opinions and views expressed on this site are solely the property of Corina Becker and does not reflect the official view of AWN and other organizations unless specifically stated. )

Thursday, November 11, 2010

Today is Remembrance Day and as I browse through the blog posts and twitter updates, I've been thinking. I come from a Mennonite family, and so am a pacifist. I don't believe in war or that killing people is the answer to problems. I believe that a peaceful resolution is possible, and will work towards reaching that goal. And so, alongside a poppy, I don a button that reads "To remember is to work for PEACE".

It's a reminder that today, we don't just honor our veterans, but also acknowledge the goals to which our veterans made sacrifices for, the purpose in which they serve. Not only to protect us from potential physical harm, but to defend our rights and freedoms and the rights and freedoms of people all over the world.

Because when we remember war on this day, we remember the horrors of war. The rape, the torture, the mass murders of ethnic groups and the disabled.

We remember them as well, and we say "never again".

Never again will we silently witness the atrocities that occurred in the past.

But we're not done yet, are we? There are still wars going on, there is still people being discriminated against, people being abused, tortured, raped and murdered for no good reason. And there's really no justification for any of it. But as long as there is injustice, as long as there is hate, as long as every man, woman and child of every background and origin (and I mean, EVERY) cannot feel safe everywhere, we're not done yet.

And so, for the sacrifices of the past, the sake of the present and the hopes of the future, today we remember what has gone on before, in order to work for peace.

(this post was actually a little hard to write. I keep remembering my grandparents, Oma and Opa. They survived WWII in Russia. From what we know, Opa was drafted by gunpoint first by the Russian army, and then the German army before running away and surrendering to the American army. Oma apparently walked across Russia to follow the German army out of the country. They met in a refugee camp. Opa had apparently been engaged to another woman, but couldn't find her, and so married Oma. They moved to Canada when my Dad was 2 years old. That's what we know. They wouldn't say more and records from then are scattered and incomplete. Honestly, from what I do know, I can't blame them for not talking about it.)

Now that there is some distance and time from November 1, 2010, Autistics Speak Day, I have had time to reflect and put the experience in context.

In many ways, #ASDay was really any other day. Each person who moderated (thank you to the @TheCoffeeKlatch for allowing me to do so) and who participated in the Tweet chat brought their thoughts, feelings, experiences, two cents, and expertise. For those who are on the spectrum (i.e. @TMBMT, @CorinaBecker, @Heather_Sedlock), #ASDay was a moment in the spotlight. Not the interrogation spotlight that makes your heart race and your body sweat. Rather, the sharing spotlight, the all-eyes-on-you and what you say because this is a time to learn.

While listening to those in spotlight, I was amazed to read many Aspies and auties continually reminding everyone that their personal experiences captured their perspective but did not speak for the entire community. As the old saying goes: If you’ve met one person on the spectrum, you’ve met one person on the spectrum.

I was amazed by this contextualizing of personal experiences because it allowed the space for all voices to be heard equally. When I think about the public persona of ASD (a topic I’ve mentioned in my blog post, “Keep Your Clothes on, Jenny; Autism is Better than That”), Temple Grandin is the most well-known person on the spectrum. Many NTs use her as the paradigm for all experiences with ASD. #ASDay was in direct contrast. I spoke to many individuals on the spectrum who shared their life’s story while knowing it was only representative of their particular color on the spectrum. In so doing, they encouraged me to seek out others and ask, beg, and plead for their opinions on a particular subject, too. Crudely, I could compare it to a chili cook-off: Taste all the flavors. But, don’t pick just one. Get all of the recipes and savor them all.

I can only imagine what this day meant to individuals on the spectrum. I felt like part of a larger community that was often silenced and misunderstood. I tweeted as an “autism specialist” and had my spectrum of knowledge broadened (pun intended), but this is a selfish perspective. Those individuals on the spectrum, who countered the idea of being silent for a day to increase awareness (Communication Shutdown), were the main characters. And they were gracious, well-intentioned, determined, and respectful. They shared their day-to-day experiences in ways that people take for granted and can’t even begin to fathom.

#ASDay became more than just another day. It was a large-scale dialogue about daily struggles, successes, and challenges that we didn’t know about, couldn’t guess about, and, perhaps, never dreamed of. Lifetimes of day-to-day experiences congealed to document what it’s like to be a person with an autism spectrum disorder. #ASDay was a living, breathing, and talking personal and community history book with pages filled by unsung heroes with powerful stories.

Tuesday, November 2, 2010

Yesterday, November 1, was Autistics Speaking Day, and it was a resounding success!! I am completely speechless trying to describe it; I keep using the words "incredible" and "awesome", but truly these are weak words to accurately express it. The responses and contributions from everyone greatly exceeded my expectations.

I will be honest, when I proposed Autistics Speaking Day, I thought that at best it would be myself and a few others, tweeting on Twitter and maybe putting up a few blog posts. And when the criticisms came in, with people saying that much wouldn't happen, so why bother, I thought of two things. The two things that leads me to be active in the Autism and Disability communities.

I thought "Well, it might not reach too many people, but it's worth it if I can make even a little difference in someone's life."

And then I thought, "Well, you don't know that for sure, so what's the harm in me trying?"

Hope for the best, expect the worst, and be pleasantly surprised. And I was totally surprised. I don't think I have ever been so pleased to be so wrong before. It was great to see and hear everyone online. I want to thank everyone for their hard work.

I've gotten messages of people thanking me for putting ASDay together, but I don't think that's right. I don't deserve all of the credit. Yes, I thought of holding a counter to Communication ShutDown, and I thought of the name, and I nearly spammed Twitter getting the word out and explaining it. But on the day itself, what did I do? I did what everyone else participating did, I posted a blog entry, and shared my experiences with others.

I did not do it all; I do not deserve all the praise for the success of ASDay.

And most of all, it was every single Autistic person who joined in and participated. It couldn't have happened without any of you.

I am only one person, but together, we are a community of voices. I hope that ASDay was informative for many, and that the day inspired not only parents and professionals, but Autistics to be involved in processes and decisions that ultimately affect us. We should not be silent when we have something to say. And certainly, we weren't on November 1st.

Right now, I want to acknowledge all the participants and contributers who wrote blogs, all their hard work that made ASDay a success. November 1st was your day.

Monday, November 1, 2010

I've been thinking about what to post here for today, shifting through all my memories and experiences. To be honest, I'm pretty sure I could write a book covering it all. But the problem is always where to start.

I've had my share of troubles through life, and I still do and will have troubles. But I won't dwell on them or indulge in self-pity. Life is full of difficulties, and we all have our own specific difficulties.

So instead of concentrating on negative aspects, I choose to focus on my strengths and skills. One of these strengths is writing, and expressing myself through writing. Since 2009, I have been writing on this blog about Autism, and so for Autistics Speaking Day, I am listing some of the posts that I feel are some of my best work.

If people participating in Autistics Speaking Day would like to comment with their contributing blog posts or other forms of communication, please do so. I would love to see your words.

I can't say this enough; thank you all very much for your support and participation. By sheer response, this day has been successful beyond measure, and it is all due to your hard work and contributions.

Thank you, thank you, thank you all.

And here's to raising Autism Awareness and working towards a better future for all.